Monday, April 28, 2014

Don't
you love how life has this way of throwing you a curve ball? Dead
battery before
work, sick kids on a Monday morning. I don't care who you are you
had one
thrown your way. I had one thrown my way this February, but it
wasn't just any
curve ball, it was one in the dirt, waaay outside. Almost halfway
through my
front line chemo I found a lump in my neck. I wanted to be sick, I
wanted there
to be a reason for a swollen lymph node in my neck, but I wasn't sick
and I knew there was probably only one reason it was there. When Dr.
Messing felt the knot he was very quiet. He is not one to speculate
and it would be futile to ask him to do so. But he immediately said
he wanted me to have a biopsy that day and that said it all. So I
received my chemo and after went over to HEB for a biopsy. And thus
on February 12th I had received what would be my last front line
chemo treatment of Carboplatanin and Taxol because my biopsy came back
positive for Ovarian cancer. The pathology showed only one cell
type, Ovarian Clear Cell. Good news? The other cancer types present
on my tumor in November seem to be stopped by the chemo. The bad
news? Clear cell just laughed at the chemo. Laughed in my face. I
had to wait a long weekend to get a CT scan on Monday and Doctor
Messing called me about 5pm that very day. First words from his
mouth were, ”It's not good.” Getting straight to the point he
told me there were several other cancerous lymph nodes in my abdomen
and a thickening at the base of my intestines. The chemo didn't work.
I had completed nine rounds, half way done and the cancer had
spread. But, wait. That made no sense. And this was the most
difficult thing to wrap my head around. I was clear of cancer. My
clear scan in December said so. My CA125had been 425 after my
surgery in November and now it was 27.5, normal and cancer free.
Right? I was just doing chemo to make sure we got every bad cell not
because I had active cancer. After my diagnosis Stanley would say
over and over, “You will get your chemo and when you are done they
will do a scan and you will be cancer free!” That was the plan and
the way it was supposed to go. Honestly this news hit me harder than
my initial diagnosis. I cried, we cried. I was extremely sad and
Stanley was extremely mad. Things felt sooo out of control and for
those very reasons we decided at that point to keep this news to
ourselves. To take the rest of our family and friends on this roller
coaster ride was in our minds just cruel. We knew there would a plan
at some point. Some chemo or trial I would do to try and kill this
beast, but until that plan was in action we felt like we were on this
terrible collision course. The very hardest thing to do was act
like everything was fine. I felt terrible lying to people and
telling them everything was fine and to all of those that I did, I
sincerely apologize. And if I appeared standoffish it was only
because lying was such a difficult thing for me to do. I was afraid
the truth was written all over my face. To say those were some dark
days is putting it mildly.

We
met with Doctor Messing on February 19th
and suggested we seek other opinions and possibly a phase 1 trial.
He did not feel comfortable just pulling any drug off the shelf,
mainly because the rate at which my cancer was growing was fast,
scary fast. Dr. Messing said because of the “uniqueness” of my
tumor he had sent it out for a Clearity Study. This company takes
the tumor and makes a type of blueprint of the tumor at the molecular
level and then provides a list of chemotherapy drugs which would be
most affective at targeting the tumor. Individual targeted treatment
is the therapy of the future and it is an exciting area of medicine!

At
this point I am just going to try and give a summary of what went on
the next few weeks. I don't want to write for ever and I doubt
anyone is interested in every minute detail. So that Friday we met
with Dr. James Strauss at Mary Crowley in Dallas. I had never heard
of Mary Crowley before, but I have since found out they are well
known in the area of cancer for their work in Phase One trials. Dr.
Strauss did the usual check up, breath in breath out, routine and
then cut to the chase. He did not think I was ready for any trial
yet. He thought I should try a second line of treatment first, a
three drug treatment of carboplatinum, gemzar and avastin. I did not
understand why we would try carboplatinum again since I was probably
platinum refractory, but I was very interested in gemzar and avastin.
My cancer being platinum refractory means that it is resistance to
platinum based chemotherapies. When we left Mary Crowley it was the
best I had felt in a while. Although there are many people who only
do trials as their treatment, for me it just feels like something you
would do as a last resort. True or not that is just how I feel, so
to be told I am not ready for trials made me feel so much more
NORMAL.

On
Sunday we headed to Houston to meet with MD Anderson the next
morning. We met with Dr. Stood and he also made suggestions for
second line treatment. He suggested topotecan and avasitin. There
was that avastin again. Avastin is not a true chemotherapy in that
it does not affect the cancer cells, instead it inhibits the growth
of new blood vessels that the cancer would use to grow. I had been
interested in avastin before this because my original tumor was very
vascular and had used my own blood cells to to basically build its
own blood system. That is why I had to receive two units of blood
during my initial hysterectomy when the tumor was removed. That day
we also met with the clinical trials department. They would take my
case and present it to their board on Thursday and see what trials
would best suit me. But, at this point I already knew what I was
leaning towards. Any clinical trial presented would have to wow me.
I just felt the chemo drugs being suggested to me for second line had
more hope than the unknown.

I did
not know what MD Anderson would suggest for a trial, but I knew that
if I was to do second line treatment then I needed to get things
going. So we met with Dr. Messing that week. He had also met with
his medical group and they had their own suggestions. In the end it
was decided that I would do a second line treatment of three drugs:
doxil, gemzar and avastin. I would go to MD Anderson that next
Monday to discuss their suggestions for the clinical trials. If I
declined the trial then I would start my new chemo on that next
Tuesday. Dr. Messing warned me that this three drug regimen was not
one he would normally do and that it could be very toxic, especially
to my bone marrow. But, hopefully toxic to my cancer as well! We
made our trip the next week to MD Anderson, but we did not feel the
trial they offered could do for me what this three drug approach
could. So the next Tuesday, March 4th, I went back to start my new
chemotherapy. I had to see Dr. Messing that Tuesday before I could
get my chemo, yet he was in a meeting. As I sat in the little room
waiting on him, his nurse Lynn came in and told me she thought my
Clearity study had come in the mail. A few minutes later she brought
me the results and there on the first page it read, Agents with
Potential Benefit:

topotecan(suggested by MD Anderson),

gemcitobine
or gemzar(suggested by Mary Crowley and Dr. Messing)

and

doxorubicin
or doxil(suggested by Dr. Messing).

I felt
goose bumps on the back of my neck and a chill go down my arms. OMG!
All the drugs they had been suggested over the last weeks were a
match for my tumor. This cemented everything. I knew for sure we
were doing the right thing! And 20 minutes later I got my first
dose. :)

About Me

Wife of 28 years to a guy I probably don't deserve and mother of three unique and talented kids. Diagnosed November 15, 2013 with Ovarian Cancer. I can't promise how well I will keep up with this blog, but I will at least try to hit the high lights. But, don't hold me to it. It is so much easier to be noncommittal. lol